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Stumbling through the fog: A lived experience of fibromyalgia

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This presentation was delivered as part of the ME, CFS and Fibromyalgia Alliance Malta VO/818 and European Network of Fibromyalgia Associations (ENFA) Conference held on Saturday 12 May 2018 in Attard, Malta. The conference was opened by Her Excellency, President Marie Louise Coleiro Preca.

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Stumbling through the fog: A lived experience of fibromyalgia

  1. 1. Stumbling through the fog: A lived experience of fibromyalgia EUROPEAN NETWORK OF FIBROMYALGIA ASSOCIATIONS (ENFA) MEETING SATURDAY 12 MAY 2018, ATTARD, MALTA Simon R. Stones
  2. 2. I’m Simon Stones Award-winning patient leader. Patient and carer advocate. Freelance consultant. Charity representative. Qualitative researcher. You can find me at @SimonRStones
  3. 3. “It’s not always the tears that measure the pain. Sometimes, it’s the smile we fake”
  4. 4. You’re far too young to have fibromyalgia! Fighting the myth that fibromyalgia does not discriminate by demographics, including age or gender 4
  5. 5. 1996 1999 20042006 2008 2012 2018 Diagnosed with juvenile idiopathic arthritis (JIA) Commenced treatment with methotrexate Commenced biological therapy with etanercept Onset of Crohn’s disease Diagnosed with Crohn’s disease Diagnosed with fibromyalgia Here I am…
  6. 6. There’s lots of confusion about fibromyalgia Fibro Fibrous tissues such as tendons/ligaments My Muscles Algia Pain A fibromyalgia diagnosis often feels like the last resort diagnosis… when nobody seems to really know what is wrong PAIN FATIGUE FOG Mild Severe Tired Walking dead A little slow Losing it
  7. 7. You wake up to the unknown, every day Varying pain (severity, location, duration) Swelling, stiffness and difficult moving Sensitivity to changes in weather and to noise, lights and other factors Headaches, irritable bowel syndrome and other symptoms Fatigue, ranging from tiredness to complete exhaustion Cognitive disturbances, including a lack of concentration, temporary memory impairment and mixing up words
  8. 8. 9 Anxiety Guilt Depression Isolation Worry Obsessive Judgement I don’t want to lose my job What will they think of me I’m not lazy Listen to me Is it all in my head?
  9. 9. How is your arthritis? How is your fibromyalgia? How is your Crohn’s? Fantastic, your inflammatory markers are normal! It’s probably flared up. Exercise will help. Let me know what the Gastro doctor says.
  10. 10. Drug based Trial and error We only treat the symptoms, because we don’t know enough about the underlying condition… They can make things worse It ends up being your decision Non-drug based Pain clinic Exercise and physical activity Psychological support Self- management Also known as… See how you get on, come back to clinic in 9 months The challenges of treatment
  11. 11. You need to pace yourself. Don’t do too much.
  12. 12. 1. Make time for yourself each day 2. Adjusting your sleep arrangements 3. Work smart, not hard 4. Use mind and body techniques to help you to relax and stay active 5. Use heat – whether in the shower, bath, or as heat packs 6. Record and reflect My seven strategies to managing fibromyalgia 7. Surround yourself with support
  13. 13. Make time for yourself each day Doing something for you, and never feeling guilty about doing so…
  14. 14. Adjusting your sleep arrangements Finding what works for you… there’s no right or wrong thing to do…
  15. 15. Work smart, not hard Find what works for you – there’s no point fighting yourself. As long as you manage to do what you need to do, does it matter when you do it? Mornings are a little rubbish, especially towards the end of a busy working week DAY 105:30 20:30 DAY 209:00 17:30 DAY 310:30 18:30
  16. 16. Use mind and body techniques to help you to relax and stay active You need to switch off from the busy world around us. Keeping your mind and body active is really important…
  17. 17. Use heat – whether in the shower, bath or as heat packs It’s often little ‘hacks’ which people with fibromyalgia experiment with that turn out to be useful…
  18. 18. Record and reflect It’s a great way to express your feelings, as well as noticing any patterns in symptoms… it’s also a good idea to record things so that you can remember (thanks fibro fog!)
  19. 19. Using freely- available technology Simple strategies to help you to keep track of activities and things you have done (and need to do). Place your screenshot here
  20. 20. Surround yourself with support The support of others, in the real and virtual worlds, can be of enormous value… embraced by people who ‘understand’
  21. 21. Support from those with lived experience × Medical information for healthcare professionals × Patient information for patients, carers and teachers × National helpline × Benefits helpline × Over 150 local support groups across the United Kingdom × Online support forum, including HealthUnlocked The national charity in the United Kingdom for people with fibromyalgia and their families
  22. 22. Research empowered me to take control To learn about my conditions To source evidence-based information To develop skills and techniques To find support from peers To grow in confidence
  23. 23. “If the plan does work, change it – but never change the goal…”
  24. 24. Thanks! Any questions? You can find me at: @SimonRStones Simon.Stones@fmauk.org

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